Profile of TNBC patients |
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Houston 
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Joined: May 16 2009 Location: Houston Status: Offline Points: 31 |
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 Topic: Profile of TNBC patientsPosted: May 16 2009 at 3:59am |
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I was diagnosed with TNBC last week and will have a segmental masetecomy on Monday followed by 6 mos chemo and 6 weeks radiation.. I am 50 year old white woman of comfortable means. I am confused when I read the profile of women who have this disease: lower income, primarily African American or Hispanic. Is this true? Also, it sounds like that there is not much known to treat this disease after the chemo and radiation. I have been on HRT for 2 years and cannot find information if it is related to this TNBC. I want to understand how I got this and what I can do to prevent it from coming back after my treatment. I will have my treatments at MD Anderson but my surgery at the Mayo Clinic becuase they were able to see me immediatley. I started feeling discomfort in my breast in Feb and my doctor told me if it hurts its not cancer. Went back 2 weeks ago and insisted he order a biopsy because the lump was growing and becoming more and more tender with occasional pain. The lump does not show up on a mammogram because it is at 3:00 on the left breast so I am scared that this could have been here for sometime even though my last mammogram was in October 2008.
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Nancy
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Joined: Jul 23 2007 Location: Altoona, PA Status: Offline Points: 3814 |
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Posted: May 16 2009 at 6:36am |
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Good Morning Houston,
Well, sounds like another woman was told that "cancer does not hurt", and then to find out that it really does. My daughter Lori's "cyst" hurt as did probably hundreds of thousands of other women's "cysts". When will these doctors ever learn to listen to a woman who knows their bodies better than anyone else? We need to have billboards with the words...."You fools....cancer does hurt!!"
"They" say that it affects primarily the African American and Hispanic women, but in my opinion, I don't think that "they" know diddly squat, as on this site the women are primarily caucasian. You are right that they don't know much as to after the chemo and rads, as TNBC while not really a "new bc", has not had many studies done. The phrase TNBC was coined about 5-6 years ago, even though women have been dx with this bc for many years. We have members who are 17 and 22 years from dx, and just didn't know the phrase. The HER2 was just discovered about 10 or so years ago.
I had read an article which stated that TNBC was BC+ "turned", but how true that is I do not know. Many women have been on HRT without knowing that it could lead to bc,and of course the lies from the drug companies, but since TNBC is not hormone driven, who can really say if that played a role?
Lori's "cyst" was there for over 2 years, and her GYN dismissed it, saying she had cystic breasts. Connie from here on the site will tell you that her "cyst" was there for 10 years and they told her the same thing. I think that women need to be very very aggressive when it comes to their bodies and having the doctors listen to them Lori knew it was cancer, and no one listened, just as they did not listen to you.
Houston, you did not cause your bc, and no one "causes" their cancer. After treatments, it is my opinion and that of my daughter Lori's and many others, that you have to change your diet completely, and look at what is in the foods that we eat, and many other things.
It is unforgiveable that 185,000 women are dx with bc here in the US alone, and yet there is no cure. Of course I feel that the oncs should be working hand in hand with those who can provide you with vitamins and other natural ways to keep your body healthy during treatments. MD Anderson is one of the centers which does use Turmeric for I beleive lung cancer or colon cancer, and why they do not give that to women with bc, is just a mystery.
We will be here for you every day and these amazing women and men will answer al your questions truthfully, and will provide all the support you need. Do you know what your chemo regimen will be, and when you will start? I am assuming that would be about 4 weeks after your surgery.
Do you have a family history of bc ot any other type of cancer?If so, you should have genetic testing for the BRCA gene mutation. The FORCE site has tons of info on this.
I will now send you a private message with my email so I can give you the directions for retrieving all the resources here on the site.
Hugs,
Nancy
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Nancy
DD Lori dx TNBC June 13,2007 Lumpectomy due to incorrect dx of a cyst mastectomy July 6 2007 chemo ACT all 3 every 3 weeks 6 tx Aug-Nov 28 rads ended Jan 2008 |
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mainsailset
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Joined: Jul 27 2008 Location: Washington State Status: Offline Points: 5004 |
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Posted: May 16 2009 at 7:13am |
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Houston, it is truly bizarre the misinformation that is out there. I too am a white woman in my 50's, yes my tumor hurt, yes it grew like crazy, yes I am obsessively trying to find out what causes this so I can change my life and not have to revisit cancer. But, as well as I try and take care of myself, no one can tell me what the magic formula is because no one knows the various causes of cancer. And may I say that is EXTREMELY FRUSTRATING every single day.
I found my original meetings with doctors intimidating and I often wouldn't remember my important question until days later. (It's called stress)
So I would highly recommend that throughout this process you print out articles from this site or ones you find on your own, organize notes of questions and clarifications and take them with you. You're an important member of your team and know yourself better than anyone else on the team so your questions are important.
Take care and glad you found the site.
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trip2
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Joined: Jun 03 2007 Location: Under Palm Tree Status: Offline Points: 8549 |
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Posted: May 16 2009 at 8:43am |
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Hi Houston and welcome.
Mainy is so right, research and research, print out anything you want to ask about and be sure and make a list of questions for the next visit.
We have a section in the forum called News, Resources & Tips, go thru those, we try to stay on top of what is going on for us as best we can.
You will see mention of brca 1 quite a bit because many women with triple neg do have this mutation but not all.
I hope you will consider genetic counseling.
Look forward to hearing from you soon.
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Stage 2 2003
Stage 1 2007 BRCA 1+ |
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Nancy
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Joined: Jul 23 2007 Location: Altoona, PA Status: Offline Points: 3814 |
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Posted: May 16 2009 at 9:07am |
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Houston,
I echo what Pam and Mainy have suggested as to the articles. I for one read every article that Pam posts, and while it may take you some time to go through the many pages in the resource forum, they are indeed worthwhile, and could/can make a difference as to the care that you receive. The doctors are not always up-to-date on what is published, so it is up to you to make them aware. Just start a binder with the articles and that way you can refer back to them.
I a still in awe as to the information that Pam finds, and we all know that when you are first dx, too much info can be overload, but yet so very important. Perhaps you could have a family member or a friend print out some so that you can read them when you have the time.
There is not another bc site which has the information like this site, and the dedicated members who are always searching for each other. Ask a question and before you know it, Pam has the answer, and will search until she gets it.
Hugs,
Nancy
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Nancy
DD Lori dx TNBC June 13,2007 Lumpectomy due to incorrect dx of a cyst mastectomy July 6 2007 chemo ACT all 3 every 3 weeks 6 tx Aug-Nov 28 rads ended Jan 2008 |
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TripleTip
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Joined: Apr 16 2009 Location: La Verne Status: Offline Points: 12 |
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Posted: May 16 2009 at 10:15am |
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Houston, I am neither Hispanic nor African American, but am half Filipino. I inherited many good things from my Asian father, but unfortunately, also a founder mutation in BRCA2. The BRCA2s are most often ER/PR+. When I found my lump, it seemed to grow overnight! And it hurt. My sister had had breast cancer 14 years before at 40, with no family history of cancer, even though later we would find out we were mutants. This concerned me, but our shared gynecologist said, cancer doesn't feel soft and mobile like that, and it doesn't usually hurt. He told me cancer feels like rock candy beneath the skin. Still, he insisted on the diagnostic mammo and ultrasound. He's a great guy and so I think he was mostly trying to keep me calm because I had a history of panic attacks. Before I began treatment, I spoke with a geneticist at the City of Hope, who told me at 52 it was unlikely that the cancer had a known genetic component. Still I insisted on taking the test. My insurance did not cover the test even after I got the results back. I appealed 3 times and only after another sibling turned up positive for the gene ( and was sadly diagnosed herself at 42) and I submitted her Myriad test results did Blue Shield pay. Sheesh! Both of my sisters who did have cancer, by the way, had estrogen positive cancers.
As for the gloom and doom surrounding TNBC: I had a patient who came to see me right after I was diagnosed. I was a little bummed out by the diagnosis so we talked. She told me she also had TNBC, with 2 positive nodes and was over 3 years out! I was very encouraged. My oncologist told me two years out for a triple negative is very good and I am celebrating that this month! After that 5 year mark the majority of triple negatives will not recur, whereas estrogen positives will always have a greater risk of recurrence with time and age. Good luck with treatment! It's rough but every day becomes a day to rejoice in and cherish :)
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Lump discovered May 07
Stage IIa, Grade 3 Lumpectomy, SNB, 2/5 nodes + 4 DD A/C, 10/12 Taxol Radiation 28 with 5 boosts BRCA2+ PBM with free TRAM, Salpingo oophorectomy Dec 08 |
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Zaneee
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Joined: May 02 2009 Location: New Zealand Status: Offline Points: 3 |
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Posted: May 16 2009 at 11:50am |
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Hi Houston
Just to let you know that I am also European, aged 55, have never been on HRT, always exercised, never overweight and have always had a presevative free diet and I have just had a lumpectomy and was diagnosed as triple neg and I live in New Zealand.
 All very strange so doubt HRT has a correlation with TNBC. I am also going to chemo and rads soon.Keep smiling
Cheers susie
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vdq7015
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Joined: Apr 08 2009 Location: Jacksonville, Fl Status: Offline Points: 17 |
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Posted: May 16 2009 at 1:43pm |
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Hi Houston
Welcome to this wonderful site!!! I was dx at age 46 and I am now 52 years old. I wish I would have known about this site when I first started this journey that none of us ask for. My breast hurt prior to my diagnosis and my mass was 0.5 cm and had gotten to 3 lymph nodes. I ate right and exercised regularly and was a pefect weight for my age. no family history. I had yearly mammagrams thank goodness because my mass was not palpable to my surgeon, gyn MD, husband or me. I had lost my best friend to this disease 3 years prior to my diagnosis and was scared to death. It is a roller coaster of a journey but you can do this!!! tnbc attacks all different types of women. I am caucasian .
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tnbc 0.5cm mass. 3+ lymph nodes. 4 rounds a/c, 4 rounds taxatere. left mastectomy11/2003. tram flap 6/2006
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Sunris
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Joined: May 08 2009 Status: Offline Points: 252 |
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Posted: May 16 2009 at 5:40pm |
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Uhh...Houston...we have a problem...
Our problem is this...Why are the Onc's telling us that breast cancer doesn't hurt? I am 43 caucasian, DX March '09, TNBC/Stage 3/Grade 3/4.5cm/ still unsure regarding nodes.. Do you know that I continued for MONTHS putting off getting a mammo because everything I kept reading and hearing told me that " Breast cancer doesn't hurt", and since I had pain, I believed what they were saying. This is quite frustrating! Why can't they simply say that a possible sign/symptom "MAY OR MAY NOT INCLUDE PAIN" ??? |
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